Hospital and health update

Over the past couple of weeks, several people have asked how Sasha is doing and it keeps reminding me that I haven't written the final update in our hospital saga; I left you some time ago with Hospital Stay Part 2.

So much has been happening since then (including finding us somewhere new to live, but that's a whole other story...) and now we are in the final furlong of the summer term, with even more events than usual as for us it's a Year 6 Leavers' special (for our eldest girl). So I'm not sure I have the time to do this post justice, but with a short camping trip looming and then plenty of house packing to do, I know that if I don't write it now I'll never write it.

A brief summary of parts 1 and 2 is that Sasha ended up in our local hospital after a 4 week spell of not being herself. It all started with a cough, but progressed over the weeks to an ear infection and a puffy face, plus some vomiting, which led me to take her to an out of hours doctor who sent us on to A and E at 10pm on a Saturday evening.

We stayed on the children's ward there until Thursday as they did lots of tests to try and establish what the matter was. Pneumonia was their first thought, as the chest x-ray done in A and E (around midnight!) had shown a mass on the lung, but this was discounted after a day or two as Sasha didn't actually seem that poorly (as in, her temperature and blood pressure readings were fairly constant throughout). Sasha was hooked up to a drip for antiobiotics as well as having some orally, she had a couple of x-rays, blood tests, constant monitoring, needed oxygen, had an ultrasound on her chest and finally a CT scan.

When I re-read that last sentence, it brings back the enormity of what an ordeal that must have been for our girl. Non-stop intervention when all she wanted was to be at home.

Sasha the day after arriving at the Brompton, when big Sis was allowed to visit - there'd been a whole day where they hadn't seen each other and Sasha cheered up visibly when Tamsin came back. Never underestimate the power of siblings!

So anyhow the heart ultrasound showed four leaky valves and it was that, alongside the baffling results not giving a clear diagnosis, which led to our transfer to the Royal Brompton specialist hospital in central London. We arrived there at tea time and were relieved to be shown to a side room which played a key part in helping Sasha's anxiety levels to fall again eventually. Within half an hour of arriving though, Sasha was lying down having both an ECG (Electrocardiogram) and Echocardiogram (ultrasound) of her heart. The worst parts of all that was Sasha being bored with having to lie still for around 20 minutes, followed by us trying to remove the sticky pads which hold wires on in around ten vital places. Imagine trying to get a plaster off but much worse!

It helped to make things into a game for Sasha - so lucky old Mum got covered in the stickiest plasters known to man too...

The picture below, but without the smile, and with an ultrasound being done at the same time, gives an idea of what happened to her:

Random bloke having an ECG

As we knew we were in safe hands, with heart experts at the Brompton, we were very relieved when we realised the doctors weren't overly concerned about her heart. One moderately leaky valve, but three minor leaky valves, is apparently not all that bad, thankfully. It's funny how we think our hearts control everything, but there's actually so much else going on in our bodies that is just as important. Attention was then turned to the kidneys, as Sasha's urine began to turn worryingly pink.

More X-rays and blood tests were carried out over the next couple of days - when one attempt at taking blood failed (we've been told Sasha has very thin veins, not so helpful) the nurse had to resort to squeezing blood out via a fingerprick and boy was that not fun for Sasha. All her toilet trips had to be monitored so they knew how much fluid was entering and leaving her body, to give an indication of how the kidneys were working. Probably the scariest time for me was having to watch Sasha be given extra oxygen via a mask at night times - the beep of a monitor alerting you to levels that are too low is very unnerving. Luckily the mask was just placed next to her face, not strapped on, as that would have been much more stressful for her.

Sasha at night time, with the oxygen mask

In all of this, I was acutely aware that there were really sick children all around us. Sasha probably didn't seem that poorly to others, with the puffiness being the only visible sign. As long as she had her ipad and wifi connection, she was distracted and kept quiet. Many doctors and nurses entered the room regularly to do tests and ask how she was, but knowing how anxious that was making her, I tried to field all questions and let only the most important tests be administered (by the way, it's pretty difficult for a non-medical person to work out what is necessary). There was a lovely play specialist at the Brompton who totally understood and made this sign for us:

This made a huge difference to us, and I'd advise any parents of autistic children to ask for similar, or for a reminder to be placed on the notes, so that unnecessary stress is avoided. Sasha's anxiety levels were obvious to me the whole time - one morning, when I had to nip to the bathroom myself, I asked the nurse stationed just outside the room to not let anyone in to ask Sasha questions. It was only when I got back to find Sasha in tears, with the nurse and another adult in the room, that I realised I had been too specific - I was thinking doctors, but hadn't reckoned on the cleaning staff who just walk in to clean the rooms. Sasha didn't realise that was what they were doing, and she was scared to have her space invaded by a stranger.After three days at the Brompton, we had hoped to be going home, but with no diagnosis still the specialist heart doctors decided it was best to transfer us back to our local hospital. We then endured a very hair-raising ambulance (well more of a taxi, shared with another patient, so me, Sasha and a nurse squashed sitting in the back seat, with Sasha's oxygen monitor still attached) ride back through London. I almost wish I had the time or the energy to make a complaint about it. Back in the local hospital we were well looked after though and fortunately Sasha's spirits were kept high with constant wifi access (see my review of TEP). A minor blip then came in the form of a fire alarm going off for over 45 minutes on the children's ward one evening - which if you know about Sasha's fear of fire AND bells was not a good combination. Luckily it was 'just' smoke from the microwave in the parents' room (not me, your honour) so we didn't have to fully evacuate.Two days later and a diagnosis was finally given - Post Streptococcal Glomerulonephritis. Basically a strep virus which had attacked the kidneys, leading to the further complications with lungs and heart. By then Sasha seemed much better, and we turned to the wonders of Snapchat to amuse her as we waited to be discharged:

Snapchat fun!

One last incident I can't resist recounting was the appearance of a pigeon who obviously wanted to check out the facilities for itself. It managed to fly in through this small gap in the outer window and luckily with some quick thinking we avoided it being let loose in the room by sliding the inner window shut pretty sharpish.

Two main thoughts have stayed with me; firstly that it must be unbelievably hard for those parents who find themselves stuck in hospital with very poorly children and no extra support. So please do consider donating to your local children's ward so that good facilities and distractions for the children can be provided. You can do that for the ward I was on here: Carer's Support Team, Starfish Children's Ward.

Thank you so much to all the amazing staff who came into contact with Sasha over this period (there were a lot!) and especially to the Carer's Support Team and one young nurse who told me she thought I was an amazing mum. Little things like that can boost confidence a lot.

Secondly, social media was an absolute godsend to me whilst I was stuck in hospital with Sasha for ten days. I didn't google the symptoms much.... but it was nice to have an inkling about what the doctors were talking about. Facebook enabled me to send updates out to hundreds of people in one go about how Sasha was, which was much easier than repeating a message over and over again. Thank you so much to everybody who sent messages or emails, or who 'liked' my posts. Knowing people care can make such a big difference to how anyone is feeling.

Since we've been back home, Sasha has been having regular nurse checks for her blood pressure and urine. She's now off all medication and seems completely well again. We will return to the Royal Brompton for another ECG and Echo (oh joy!) and have the trials of more blood tests and specialist kidney doctor appointment to look forward to over the summer. Oh, and a house move.... but that's another story ;)

PDA is a type of Autism Spectrum Disorder which is best approached using 'non-typical' parenting strategies (read more about PDA its...

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What is Autism?

'Autism is a lifelong developmental disability that affects the way a person communicates and relates to people around them. People with autism have difficulties with everyday social interaction'.What is PDA (Pathological Demand Avoidance)?

Pathological Demand Avoidance (PDA) is one of several Autistic Spectrum Conditions (also known as ASD, Autistic Spectrum Disorder). The central difficulty for people with PDA is their avoidance of the everyday demands made by other people, due to their high anxiety levels when they feel that they are not in control.

Children may sometimes be described as having 'challenging' or 'oppositional' behaviour. Parents describe life as 'walking on eggshells' and their child as 'Jekyll and Hyde'.